The Hidden Hardships of Lung Disease

Breathing is a basic physiological process, but it also carries deep cultural and personal meanings. It is associated intimately with our state of mind and is unique amongst our bodily processes in being both autonomic and controllable. Although it may seem like an effortless act, breathing for individuals with lung disease can require extra energy and thus be physically challenging.

In 2016, the British Lung Foundation (the only UK charity concerned with all types of lung conditions) published a special report entitled The Battle for Breath, which looked at the overall extent and impact of lung disease across the UK. The results were breathtaking (pun intended), to say the least: the report revealed that there are more people living with lung conditions in the UK than previously thought. Lung disease is one of the three biggest killers in the UK today. Not only are one in five of the UK population diagnosed with a lung disease at one point in their life, but it also kills one person every five minutes. The number of deaths from lung disease has barely changed in the last decade, and in the face of an ageing population these numbers are likely to increase further. The Battle for Breath calls for an elevation of lung disease to the same level as cancer and cardiovascular disease in terms of the UK’s health priorities.

Headquarters of the British Lung Foundation in London | Courtesy of the writer
Headquarters of the British Lung Foundation in London | Courtesy of the writer

Yet despite these staggering numbers, in England and Scotland there are currently no plans to improve the services or care available to lung disease sufferers. Although plans are in place in Wales, the British Lung Foundation has stated that these require extension and enhancement if they are going to be effective. Ian Jarrold, the British Lung Foundation’s Head of Research, reaffirmed these concerns in a blog post from November 2016, arguing that respiratory research continues to be hugely and consistently underfunded by the government. 12 million people in the UK have been diagnosed with lung disease, compared to 2.5 million with cancer, and 7 million with cardiovascular disease. Yet these latter two disease areas are estimated as receiving at least ten times as much in comparison to lung disease.

My first ‘real’ field experience of meeting people with lung disease was in March 2017, when I attended a fundraising event held in County Durham. It was hosted by a local group consisting of people who live with breathlessness, and their families and friends. Our hosts had set up several tables across the floor decorated with blue and red balloons, showing their support for the British Lung Foundation. William, who himself has lived with asthma all his life, was one of our hosts for the evening and he welcomed us with a charming speech:

Expressing my nervousness earlier on this evening, I was advised to ‘take a deep breath, you’ll be fine.’ But therein lies part of the problem. Having less than wonderful lung function isn’t always conducive to taking a deep breath. In fact, there are lots of things made a little tricky by being breathless. Even some of the things that cause enjoyable breathlessness may not be quite so enjoyable. Respiratory disease often isn’t much fun at all. Appearances can be deceptive. Many of us who struggle with breathlessness look perfectly well.  We are often round faced and rosy on [steroids]. You can’t tell that it took half an hour to get my socks on or know that I have my hair cut like this because I can no longer wield the hair drier. In fact, respiratory disease is a killer, right up there with heart disease, stroke, cancer and Alzheimer’s disease. It is, unlike many of these, on the rise as a killer. Yet for some reason, it isn’t talked about as much. Research isn’t as well supported. Neither are those who are struggling with it. Those of us affected by it aren’t sure why that is. Breathlessness can be isolating and lonely. It can be socially and physically limiting. It can be embarrassing and awkward – all that noisy breathing and coughing! It can be exhausting and frightening. The drugs can be unpleasant, with all sorts of side effects. There is often no cure, so those living with it constantly face life-threatening, life-limiting experiences with poor quality of life.

It was a heart-warming moment, especially considering how activities that rely on speech hold many challenges for people who experience breathlessness. As William illustrated, chronic breathlessness may be kept hidden for several reasons, which is why it is important to shine a light on these issues to relieve suffering and overcome stigma.

When people arrive at the clinic and are told they have a lung disease, their journey is far from over. There are more problems to overcome. When breathlessness is a symptom of lung disease it often becomes chronic. Even after maximum treatment has been offered, people are still left with significant struggles in their everyday lives. Some people deal with breathlessness better than others, but ultimately doctors are trained to treat diseases – not symptoms. For those suffering from chronic lung disease, breathlessness will become consistently worse. Eventually, doctors reach a point where ‘nothing else can be done’ and patients will stop complaining and just deal with it, meaning those living with breathlessness may become even more invisible – or perhaps even forgotten.

Bus stop advert: “Do you get out of breath doing things you used to be able to do? Tell your doctor!” (NHS) | Courtesy of the writer
Bus stop advert: ‘Do you get out of breath doing things you used to be able to do? Tell your doctor!’ (NHS) | Courtesy of the writer

Researching lung disease in the UK has taken me to several places across the country, but primarily around the North East (where lung disease is especially prevalent), together with the North West, South Wales, and urban Scotland (Glasgow, especially). The Battle for Breath explains how the high number of deaths from chronic obstructive pulmonary disease (COPD) and lung cancer – most of which are smoking-related (80%) – are a significant cause for the high mortality rates in these areas. Hospital admission rates are also higher in these regions, and especially the urban parts of northern England. Yet it is important to remember that statistics are mere abstractions that help us explain variation. The regional impact of lung disease on health services should be understood on a condition-by-condition basis.

Throughout my travels, I have made acquaintances of the most extraordinary kind. Still, there is one couple that left an imprint on my mind. Their names are Jon and Elinor, and I visited them in their home in South Tyneside. I had come to interview them for my dissertation, which was delicately done over homemade tuna sandwiches. Jon is the one with a lung condition, while Elinor is his primary caretaker. But if there is anything I have realised from talking to people with lung disease, it is that these ‘spheres’ are entangled. Lung disease affects the lives of not only the sufferers but also their families. When I asked about his condition, Jon described how:

As I child, I went to the hospital about every year or so. I had always gone, since I was very young. I was never told how my condition works. My parents might have, but it was never explained to me. At least, nothing more than that the bottom part of one of my lungs had been damaged. It was not until about 2008, when I saw a new consultant – who was just brilliant – and she told me about how my condition actually works. When she had explained it to me, I said to her, ‘You have told me more about my illness these past fifteen minutes, than anybody else in my entire life’.

This last sentence stuck with me. Despite how upsetting it may sound, these experiences are not unusual for people with lung disease. Jon has bronchiectasis that developed after he contracted pneumonia as a child, which left scarring on his lungs. Unlike other lung diseases, bronchiectasis is not caused by smoking. In bronchiectasis, the airways are scarred and inflamed with thick mucus. The airways become widened and thus cannot clear themselves properly, which means mucus continues to build up and as a result the airways can become infected by bacteria.

South Tyneside, where Jon and Elinor live, is a so-called lung disease ‘hotspot’ zone according to the British Lung Foundation. In fact, people in South Tyneside have a 62% higher risk of a future hospital admission with COPD than the UK average. Alongside that, the mortality rates for mesothelioma (a rare, aggressive form of cancer that most commonly develops in the lining of the lungs and chest wall) are higher here than almost anywhere else in the UK. More than 80% of mesothelioma cases are caused by exposure to asbestos. As the UK permitted the use of this mineral long after other countries had banned it, it is unsurprising that the numbers for this disease are as high as they are.

South Tyneside | Courtesy of the writer
South Tyneside | Courtesy of the writer

Writing in his foreword to The Battle for Breath Professor Sir Michael Marmot describes how ‘[b]reathing is something we all do, day in, day out, every day of our lives. It is so innate that most of us rarely stop to think about it. We think less of breathing than of the life it sustains.’ I believe that no truer words have been spoken about breathing. It is a universal physiological process, which is rarely given much thought. But this cannot be said for the millions of people across the UK and the rest of the world for whom the sensation of breathing is never forgotten or taken for granted. For sufferers of lung disease, these delicate organs with which they breathe are not working as they should.

If there is something I have learnt from speaking to individuals living with lung disease, it is that breathlessness is a very personal experience. It can be fleeting or a sign of something more serious. It allows us to speak, laugh, and sing. It connects us to the outside world and physical surroundings. It reflects our state of mind and can be consciously controlled. For many it has religious or spiritual significance, and thus the personal and cultural meanings of breath and breathing go beyond the simple act of keeping us alive.

Fredrik Nyman is a PhD student in the Wellcome Trust-funded project Life of Breath at Durham University

Further reading

British Lung Foundation (2016). The Battle for Breath

Carel, Havi (2016). Phenomenology of Illness. Oxford: Oxford University Press.

Macnaughton, Jane (2016). Why is breathlessness invisible?, Life of Breath Blog.

Macnaughton, Jane and Carel, Havi (2016). Breathing and Breathlessness in Clinic and Culture: Using Critical Medical Humanities to Bridge an Epistemic Gap. In The Edinburgh Companion to the Critical Medical Humanities. Edinburgh: Edinburgh University Press.

Correspondence to Fredrik Nyman: